Sunday, June 27, 2010

It occurred to me that while I’ve written about certain feelings about being pregnant, I haven’t written too much about the physical experience since I announced I was pregnant.

There is very little information out there on PCD and pregnancy—an outdated study from the early 1980s here or there, and beyond that, many of us patients rely on anecdotal experiences. I’ve gotten messages and e-mails asking for details: lung functions prior to pregnancy, medications, exercise, etc. I know I benefited from reading about this PCD pregnancy. I suspect many rare disease patients have the same problem.

Since we’re almost into the third trimester, I figured it was a good time to take stock of a high-risk, rare disease pregnancy through the first two trimesters. Even if you don’t have PCD, brochiectasis, or any of the other conditions I have, hopefully some of it will be useful anyway, particularly the emotions involved.

“The pregnancy has been challenging but the baby is doing great.”

That’s my quick and easy answer to people who know me and ask how things are going, and it really is the truth. Things have been going well, in that the baby is thriving, but I don’t make the mistake of equating things going “well” with things being “easy.”

The First Trimester**I’m going up to 18 weeks here, even though that spills into the second trimester, because 18 weeks was a real turning point for me.

Typical Pregnancy Stuff: I started getting queasy at about 6 weeks, and from about 8 weeks through 18, I had a lot of morning sickness (like, throwing up for hours each day, anywhere, anyplace). I was pretty tired, though many things could explain that. I’m reluctant to focus on this—after all we’ve been through I swore I’d never complain about pregnancy symptoms. Plus, unless you’re one of the people with really severe, constant, dehydrating nausea (and I know some people truly suffer with this) it’s not exactly a news flash to be pregnant and tired/sick to your stomach. I didn’t mind it that much because it made me feel like a “normal” pregnant person.

Other than that, we had a ton of ultrasounds, very frequent doctor appointments, and other than worries very early on, each scan showed normal growth. Our NT scan went great, all blood work looked good.

Illness-Related Stuff: A lot of the first 18 weeks were rough from an illness angle. I got sick in February and it didn’t fully resolve until May. I was hospitalized for a few days in late March and the weeks following that were the worst. Because my breathing was so labored and the medicines to help it are stimulants, I went weeks and weeks without sleeping more than 2-3 hours a night. When I did sleep my wheezing was so audible I’d hear it in my own light sleeping consciousness (and wake my husband with it) and my dreams were filled with the actual wheezing filling the room, dreams where I was suffocating. I was working a full time job and several part-time jobs (where no one knew I was pregnant yet) and with the lack of sleep and the infection, other medical conditions, the throwing up and, you know, being pregnant, it was a struggle.

Other illness stuff: my thyroid was monitored closely. I saw a nutritionist to make sure I was getting the right amounts of nutrients due to being sick to my stomach a lot and being celiac. My adrenals held up despite having to go back on steroids. I stayed on suppressive antibiotics the whole time, and had IV antibiotics for a short spell.

Emotions: All over the place. Thrilled beyond description to be pregnant. Terrified when I was in the hospital and on some serious meds that the baby would suffer (she didn’t, as many ultrasounds confirmed.) Guilty that something with my body could potentially harm her, when it was my job to protect her. Worried that the whole pregnancy would be like this, cycling in and out of the hospital. Cautious about telling people or “acting” too pregnant in case something happened. Lonely/isolated after being in “lockdown” months due to infection and not being able to contract anything from others (just work-home-work-hospital-home) but knowing it was worth it. Grateful and still in awe this was actually happening.

The Second Trimester**Starting this from week 18

Typical Pregnancy Stuff: The stomach problems died down around 18 weeks and now it’s mainly indigestion with very occasional sickness. I started feeling movement at 16 weeks (very light) and by 22 weeks, felt movement all the time. No matter how many times a day she kicks or squirms, no matter where I am or what I am doing, it always makes me smile. It is the best thing ever. Her kicks make my husband laugh out loud, and I could hear that sound forever.

The anatomy scan went well (the second time around) and all body parts and systems looked good. We found out we were having a girl(!). I had my glucose test quite early because of my steroid use, history, and increased risk, and passed it. (Yay!) We’ve had a bunch more ultrasounds and very frequent appointments (every week or two since early in the first trimester) and entered the “ultrasound at every appointment” realm at 25 weeks (and not the quick, in-office portable ones, the real deal.) She continues to do really well, measuring on time for everything and moving around a ton. We feel really comfortable with our high-risk maternal fetal medicine doctor, nurse practitioner, and nursing staff, and my lung doctor sees me more often than he did and is totally in the loop.

I’ve started to really show recently. I’ve had SPD (pelvic bone out of place, hip/thigh/back pain) for weeks now, but learned exercises and stretches to help it, and get in/out of cars and bed more slowly. Again, it’s not something that bothers me because it is also sort of normal to have those pains, and that is reassuring to me in its own way. My feet have started to swell but summertime flip-flops make that an easy fix.

Illness-Related Stuff: While some of the risks are much scarier, in some ways the second trimester is way better than the first.The winter/spring nastiness finally died down in May. Now I have really good days and really bad ones, and take advantage of the good ones. The humidity is way more challenging than it normally is for me. Some low oxygen readings prompted my team to have me get a pulse oximeter and take readings on bad days when I am not moving air. I learned a baby’s threshold for oxygen is much lower than ours, so a level in the low 90s or high 80s is problematic; mid-80s could be lethal. So I have a certain reading I am supposed to call them if I hit, and they’ll admit me and put me on oxygen. I’m still on (safe) suppressive antibiotics because a fear is an infection could trigger early labor but right now do not have an acute infection.

I also check my blood pressure a couple of times a day because at around 20 weeks, I started having high blood pressure. I’ve been schooled on the other warning signs of pre-eclampsia and keep an eye out for them. So far, it’s just high blood pressure and again I’ve been given a certain BP reading I shouldn’t go above, and if I do, I need to call, and need to call if I notice any of the other symptoms of pre-e. I try to stay on top of different readings without worrying unnecessarily or getting stressed out.

Other illness stuff: My thyroid is behaving itself, my intense food aversions have mellowed and I have no issues with managing the celiac stuff. I am tired, but what pregnant woman isn’t. Plus, days when I am not moving a lot of air or really work to breathe wear me out, but that is nothing new.

Emotions: Sheer joy. Intense relief when we hit the milestone of viability. Apprehension about keeping her safe and sound in there for at least another 10 weeks. Feeling powerless sometimes when I think about something wrong with me hurting her or causing early delivery. Encouraged that we have all sorts of plans and protocols in place should any of our major potential scenarios play out. Hopeful that things will go smoothly and she will get as close to full term as possible. Proud of my body for doing its job and allowing her to grow; frustrated when I allow myself to think it’s the same body that could cause real problems. Incredibly excited to meet her, and so grateful to get the chance to experience these milestones and feel her grow inside of me. Excited to get to the third trimester, and aware it will likely be an intense few months with even more monitoring, appointments, etc.

There are a lot of moving parts in any high-risk pregnancy (heck, in any pregnancy, high-risk or not!) but I feel like we have a good handle on the variables we can somewhat control, and I’ve accepted some things are beyond our control.

I wouldn’t trade a second of it, and most of what we’ve faced we were prepared for. So far, it could have been a lot more complicated, and we’re grateful for that. It is an amazing experience we doubted we’d ever have, and we try not to take a second of it for granted.

I’ll post more later on third-trimester experiences and concerns, but end with the most important point of all: the baby is doing great. With that in mind, everything else is manageable.

Wednesday, June 16, 2010

Let’s focus on the love part first. I am a New Englander, born and raised, and have a deep appreciation for four distinct seasons and all that comes with them: the crisp golds and crimsons of autumn leaves; the first snow fall that leaves lacy patterns etched on the windows; the heady scent of hyacinth and freshly mowed grass in spring’s thaw; the nostalgic smell of salt water and suntan lotion that is quintessentially summer on Cape Cod.

As a person of extremes, perhaps it is not all that surprising that I love the extremes of life here, from the bitterly cold winter nights that require extra blankets, to the lazy, languid August days that call for iced tea and air conditioners. Just as my internal clock is largely set to semester-time, it too follows the calendar. Fall always feels like a fresh start, summer the time to catch up.

The thing is, though, weather doesn’t agree with me all that well. The winter season—okay, to be honest, this now stretches from Oct-May for my body—known for colds and viruses destroys me. I can usually count on one hand the days I am not acutely sick. My temperamental lungs respond violently to rapid fluctuations in the weather, so those weeks when summer turns into fall and winter turns into spring and the conditions go back and forth are always bumpy. And while summer usually means respite from the constant infections, humidity is horrible for my breathing, meaning on bad days I cannot take a breath outside.

Of course, not every day is humid; as I told my lung doctor yesterday, I have very good days and very bad ones in the summer so I capitalize on the good ones.

When I was really, really sick in high school (like missing months of school sick) my doctors suggested taking a year off and moving to Arizona to see if the climate helped my dysfunctional immune system. I refused because I didn’t want to give up my class rank (yes I was a bit crazy) and I don’t regret it. I spent a vacation in Arizona and wheezed the whole time anyway.

But now and again I do wonder if a different climate would suit me better. I lived in Washington, DC for a few years and really missed the sharp changes in season we get here in Boston. The climate there was soupy, swampy, and suffocating, and I’ve never spent more time as an inpatient than I did then. I adored living in Dublin and the cool, consistent weather was actually quite favorable, but there’s that little matter of it being just a tad far away.

Everything is a trade off. The cost of living is intense here, but there’s reason enough for that. Perhaps I would have fewer bad days (but who knows, really) somewhere else, but there are so many other things that go into our life choices: here we have extended family, friends, and a support network. That is always important, but especially important when you’re in a high-risk pregnancy and about to raise a child while chronically ill. It is a great area in terms of opportunities for my career. We live literally 10 minutes from one of the best hospitals in the world, where all my doctors are just a few floors apart. (Since I am there every week, this comes in handy).

So I’ll take the weather extremes in hand. Plus, if you’ve ever seen Boston in April or a Cape Cod sunset, you’ll know why it’s worth it.

Do seasonal changes affect your health and if so, how do you compensate? Does your health at least partially dictate where you live?

Wednesday, June 02, 2010

Various medical issues—some my own, most of them other people’s—have kept me away from here longer than I’d anticipated. Everything is okay, but recent events reminded me that health situations can change so quickly, that you can’t plan for some things, and that you have to be willing to adapt, switch gears, and sometimes, do what doctors tell you even if it wasn’t on your radar.

Living in the moment is not easy for me. I am a type A, detail-oriented, list-making person. My natural proclivity for being a control freak is certainly exacerbated by the fact that life with chronic illness very often throws all semblance of control out the window, but the natural proclivity is there nonetheless. For better and for worse, it’s who I am.

But right now, the best thing I can do is abandon my need for a tenacious grip on the future, to have a plan for every outcome and count on the details to soothe me.

When people find out you are pregnant, they naturally start asking a lot of well-intentioned questions: When are you due? Do you know what you’re having? How are you feeling? These are the easy ones to answer.

But then we get to harder ones: Will you have a c-section? Will you bottle feed or nurse? Are you going to have a second?

The short answer: Um, I don’t know.

Would you believe that in all of my many high-risk appointments and ultrasounds we have not discussed the actual birth? Partially it’s because I am only 23 weeks and we have time to discuss the rest, but it’s also because my entire team very much takes things day by day with me. Any change in labs, pulmonary status, infection status, etc and they want to know immediately. Right now, their focus is on keeping me as healthy as possible, because a healthier me means a healthier baby girl.

I realized a long time ago that having a medically intensive, high-risk pregnancy meant surrendering a lot of control to my expert doctors. Of course I have preferences—I’d prefer not to have major abdominal surgery—but I also know at the end of the day, we will decide what is best for the baby. I am not someone who can parse out a detailed birth plan, because my health will dictate what we do.

(I covered some of the risks of a PCD pregnancy in Life Disrupted but here’s a brief recap, for context: “normal” PCD infections last longer and are more serious in pregnant women, especially as lung volume changes, meaning I can reasonably expect to be in the hospital more often and for longer periods. The biggest concern is pre-term delivery, either since infections can trigger early labor or because we reach a tipping point where the risks of lower oxygenation outweigh the risks of premature birth. Whether I am induced earlier, need a c-section, or go close to full term and have a more traditional delivery depends on a huge number of variables, and again, I will do whatever my doctors say gives my baby the healthiest start possible. These are the major concerns; we’re juggling a lot of other competing issues too.)

I should also emphasize that though we have had some rocky patches so far, the baby is fabulous—healthy and thriving.

We haven’t discussed formula versus breastfeeding yet. If I can, I’d like to try; it depends on whether my medications after delivery are safe. I will defer to my team and what they say is prudent for the baby. Again, I have my own personal preferences but realize I may have to adjust my expectations for the best outcome.

Of all the well-intentioned and common questions pregnant women get, for several reasons the one about having more children is the one that drives me crazy. First and foremost, this pregnancy took so long to achieve and we continue to fight incredibly hard to keep her safe. I don’t want to fast-forward through this precious period of time, to think about hypothetical children. I want to focus on the child who is growing here in the present, the one we waited four years for. I do not take her safe entry into the world for granted.

But also? It’s a really personal, loaded question. I love having siblings and would love to be able to give our daughter siblings but it is complicated and for lots of reasons that I don’t need to detail here, it may not be in cards. Who knows what will happen, but I do know that I don’t need to be reminded of what I might not be able to give her, especially right now.

We’ve had some long, rough months and a lot of the journey remains ahead of us. Right now, in this moment, we are in a good, stable place. I want to enjoy this moment, and live fully in this moment. I am so grateful we are here, and that she is okay, and that is all that matters. As much as it goes against my instincts, I am relieved (happy) to just take things day by day. I can’t plan for everything. I can just do my best, listen to my wonderful doctors, nurses, and nurse practitioners, and hope that all our combined hard work pays off.

I realize this is a pregnancy-centered post, but I think the same applies to living with illness in general: health status can change in an instant, no matter what we do. We can’t spend every second worrying about what might happen or what else we could do to prevent things or we miss out on the present.